Sorry to post on such a crappy topic. So this study came out and it kind of scared me a bit as I have a focus score of 8 from my biopsy at diagnosis which is quite high.
It seems to suggest that the higher your focus score when diagnosed with sjogren's syndrome the higher your risk of lymphoma. So of course I then looked up markers for lymphoma so I could keep an eye out in future and some of my results seem to correlate with markers already:
Creatinine Kinase at 729 (high)
Lactate Dehydrogenase at 244 (high)
Iron and iron binding are low
White cell count high
MCH and MCHC low
Neutrophils high
ENA and Ro positive
DSDNA IGG at 20 (high)
ANA at 1:1280
Rheumatoid Factor 39 (high)
I do have night sweats now and then, I do get itchy a bit now and them and I get pain where my spleen in which comes and goes on occasion but I haven't noticed any swellings or lumps so far.
Would I know if I had lymphoma? Are there clear symptoms and am I worrying over nothing? Should I be asking to be checked? How do you check for lymphoma?
Sorry I got spooked and likely frightened myself. But I figured I'd post here as I know I can count on you guys for some decent advice on what I should do and to tell me if I'm scaring myself over nothing! xxx
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Hi I have a family history of non hodgkins lymphoma. I've lost 6 members of my family( that I know of) Inc my dad age 45 ( I was 4) 1 of his brothers age 30 ,another brother in his 70s , his sister age 81 and his father in his 50s.his mother also died from leukaemia. Immunospressants come with an increased risk of lymphoma but after a chin wag my consultants decided the benefits out weight the risks.i asked several years ago about screening but was told then it wasnt done things may have changed .l was told just to be vigilant for lumps and bumps and I take some comfort that my bloods are currently checked every month .i think you've got to relax about some of these things otherwise they take over ...I know as I had a hard time as I approached the age my dad died.keep it in perspective Xx
I'm so sorry to hear about your family history spanielmadlady. What a tragedy. Thank you so much for sharing and also for the advice - definitely going to try to keep it in perspective.xxx
My dad died In 1974 so treatments have improved massively since then.i don't think you are bonkers btw it's always a good thing to be aware of these things but weve not to let our worries and fears add to the already stressful life we lead xxx
Hello, my 19 year old son was diagnosed with hodgkins lymphoma in 2013.His symptoms were absolute exhaustion where by when he dragged himself out of bed for school of a morning it felt as if he had not been to bed. Napping when he came in from school.He went to the doctor's to have a blood test for anaemia. I had previously been diagnosed and it was similar symptoms.About 10 days later we ended up in A and E as he'd found a lump in his neck.When speaking to the doctor's he said he'd had severe night sweats which he hadn't mentioned to us.His bloods showed nothing abnormal though.He had a biopsy and hodgkins lymphoma was diagnosed. He's absolutely fine now after treatment.Each appointment to his consultant his bloods were tested and he was checked for lumps in his neck, under his arms and in his groin.He was asked if he had night sweats. Of course he is more aware now and always checks himself in the shower for lumps.Hope this helps and my best wishes to you.
I can't even imagine how difficult it must be to have a son diagnosed so young. Thanks so much for the advice cavapoochonowner. Really helpful and I hope he continues to do brilliantly!xxx
I don’t have same bloods as you and I’m a long way into Sjögren’s now with overlaps arriving. But I do know that even having Sjögren’s only increases the risk of nhLymphoma by 4%. Which really isn’t much in the scheme of things.
My lip biopsy was also high - 100% foci infiltration. But until recently I haven’t worried much. Then I learned that it’s the high immunoglobulins affecting about 30% of those with Sjögren’s which put us at greater risk of lymphoma not the Ro antibody of itself.
I don’t have Sjögren’s antibodies but I do have polyclonal gammopathy which is usually more associated with Ro antibodies. Still I wasn’t concerned because my only specific antibody is for systemic sclerosis not for Sjögren’s.
But over the last year I’ve suffered from a lot of unexplained weight loss and have abdominal issues galore plus getting even worse fatigue than usual -almost narcolepsy.
Plus my inflammatory markers are so high that I’m in the Hyperviscocity category without any joint pain or swelling to explain this. So I started to worry about multiple myeloma and lymphoma - especially when a urologist mentioned possible malignancy and gave me a CT with contrast - thankfully only showing a stage 2 (complex but benign) renal cyst. He referred me to nephrology for likely renal involvement of Sjögren’s - interstitial nephritis I think.
Then came a maxillofacial chap who thinks I’m at high risk of oral malignancy due to lesions on my lip so I am to have biopsies. This just about sent my anxiety through the roof!
So I explained all this on Monday to my lovely rheumatologist and she said no I wasn’t going mad - my plasma viscocity is too high even for someone with Sjögren’s and we do need to work out why.
So she said she could easily get me tested for both lymphoma and multiple myeloma and hopefully allay my fears. To be honest I’m more concerned about multiple myeloma than I am about lymphoma because this tarries more with my symptoms and I don’t have enlarged lymph glands around my face and neck or underarms.
Personally I do think all Sjögren’s patients should be checked for lymph gland enlargement routinely by our rheumatolgists because it is the main systemic risk associated specifically with Sjögren’s. But it’s still a pretty low risk and as long as it’s caught in time, it’s very treatable.
But now I’ve told my rheumi my fears I feel much less fearful and am more concerned about how to manage my ongoing severe GI issues which I no longer fear might be malignancy but think are likely to be related to my overlap systemic sclerosis.
If you’re worried then please ask your rheumi or your GP to check or send you for CT or MRI. A worry shared is a worry halved!
282523 you literally understood me straightaway. It's that thing of knowing, ok I'm at risk of developing this, it doesn't seem to be very easily detectable but catching it early is important so how do I make sure I'm keeping an eye out for it. etc.The 4% figure was really helpful with the perspective. I will have a chat with my rheumy when I see her in september. Thanks so much for reassuring me I'm not completely bonkers. I do feel silly and like a total hypochondriac when I start overthinking things like this so I'm grateful to you. xxxx
I think we all overthink sometimes - it’s just called being human. I’m so glad my reply reassured you somewhat. I’m on Mycophenolate and just got up to the highest dose and also get my 3 monthly Iloprost infusions next week. I’ve been a bundle of anxieties for a while but it made all the difference explaining my fears to my rheumi on Monday. I find that it’s when people diminish what I’m feeling that my fears and anxieties escalate. My rheumi didn’t do this but instead she was sympathetic, checked my neck and armpits and listened.
She is sending me for full CT and Bence Jones urine test plus she is writing to the colorectal surgeon for me as I’m bed and toilet bound so much of the time now. Now I know I’m getting these tests I feel sure that they will be fine and that my autoimmune disease overlap is responsible for my Hyperviscocity.
It’s the fear of being belittled by doctors and people on forums that gets my anxieties screaming. Especially with Sjögren’s when people say “oh that’s just dry eyes and mouth”. If only!!! When Sjögren’s isn’t taken as seriously as it should be as a systemic autoimmune disease then I feel a mix of panic and anxiety surging within about what might get missed.
Once I know I’m being taken seriously my fears tend to diminish and are replaced by healthy pragmatism! Hope your rheumi can do the same for you xx
I’ve got lymphoma, had treatment two years ago but unfortunately it came back. I’m on watch and wait now. My first symptom was weight loss, then night sweats, itching on my scalp then swollen lymph node on my neck which got larger. When I was examined I also had a lump under my arm and another on my neck. Biopsy showed a rare form of NHL. X-rays also showed it was at side of my lungs and kidneys. I had regular blood tests at the time and nothing was picked up then. It was the lump that made me go to my GP. Felt tired all the time and couldn’t really eat as I had no appetite. Looking back I should have went sooner. They don’t always do treatment if it’s an indolent one, mine was stage 3/4 with B symptoms. I have been getting bloods checked every 3 months and used to get examined with my haematologist but now it’s a phone call. I do check my neck, arms and groin as that’s what she would have done, I’m hoping I get a ct scan soon to check my lungs as it came back in them as well. Just be vigilant is all I can advise, it did take me by surprise. I have MCTD and a lot of the symptoms were similar to a flare and I didn’t think it was anything else.
😍 Hello Lizard: am v much feeling for you + inspired by you
Am very grateful to you, insomniacette, Lizard, & everyone who’s replying because I’m high risk of lymphoma and have been feeling uncertain about how to be alert to signs etc.
I echo all the above! Lizard you are amazing. Barnclown - thank you for the kind words. It's always difficult to know whether to talk about this stuff but it is something that has been on my mind and this forum is so fabulous I thought why not! xxx
This is interesting. I was diagnosed with non-Hodgkins lymphoma in 2003 on the basis of a biopsy done on a lump in one breast. Other than that I had no symptoms. I was diagnosed with lupus in 2016.
So sorry to hear about your diagnosis Kimplr. I think you've hit the nail on the head - it's really hard to know what are and aren't symptoms which means it's difficult to catch this thing early.xxx
Only way to diagnose lymphoma is through lymph node biopsy. Lupus and Sjögrens can look exactly like lymphoma except our lymph nodes have no evidence of malignancy or accelerated growth in one cell line. My labs are a dead ringer for lymphoma including high EBV titers (very common in large B cell lymphomas).
Don’t fret too much. If your biopsy doesn’t mention malignancy or monoclonal population of cells then you should be fine. Yes, you will be at risk for lymphoma. Just take care of your present self which will help prevent development of lymphoma.
If lymphoma decides to show itself, your nodes will get super big and a good portion of people lose a lot of weight quickly. I don’t think the fatigue would be that much different. They also get weird rashes that don’t respond to steroids. I still get night sweats and they never abated for me. I use an Ooler for my mattress. I don’t think sweats are highly specific. My WBC have been riding around 2-3k. Both neutrophils and lymphocytes have gone <1000 on different occasions. My platelets have also dropped a few times. Been going on for 15 yrs and not much has changed.
I lost my Dad to Non Hodgkin's Lymphoma last year. There are many types of NHL - his was Lymphoplasmacytic lymphoma, also known as Waldenstrom macroglobulinemia - a low-grade B cell lymphoma producing high leveIs of IgM paraprotein.
When diagnosed 12 years earlier all his blood counts were low.
-Low platelets were causing bruising
-Low RBCs / Low Hb causing exhaustion.
-Low white cells, including neutrophils - so they were concerned he could easily get an infection.
This pancytopenia was because his bone marrow was producing neoplastic plasma cells instead.
They examined blood and did a bone marrow biopsy to diagnose.
Mean Cell Haemoglobin (MCH) and Mean Cell Haemoglobin Concentration (MCHC) were a bit higher, may be to compensate for there being less RBCs.
He was losing weight and looked slightly jaundiced.
He had not a clue he had cancer, he just thought increase in tiredness was due to his age. Things suddenly changed, his body no longer coped due to the bone marrow tipping over to produce more rouge plasma cells - the change in health he noticed happened over about a month.
My GP thinks I may have Sjogren's, as symptoms I have include dry mouth.
I have my first rheumatology appointment soon.
I get sweats, and aching glands..and my white cells have dropped, so worry that I have hit 'wait and see' stage that my Dad never recognised. I'll be asking the same questions as you. Specifically I'll be wondering if I have a mutation of of gene MYD88 which is found in WM.
Maybe Sjogren's and NHL have similar markers anyway as metabolic pathways may align a bit. The treatments I notice are very similar too.
I'm so sorry to hear about your dad StriatedCaracara and thank you for kindly sharing the info. It's a really helpful post outlining what happened as a base for comparison. Thank you and my deepest condolences for your loss. xxx
I have Sjogrens- diagnosed 4 yrs, and also have Immune Thrombocytopenia (autoimmune low platelets) for 12 years. I see an oncologist/hematologist every three months for the ITP. Along with treating the low platelets, he is always looking for cancer esp lymphoma, which I am grateful. He checks my lymph nodes and asks about the symptoms that everyone has mentioned- weight loss, night sweats, rashes, unusual fatigue. He does a lab test called LDH (in the states). It checks for general damage to cells I believe? A high LDH could point to cancer.
Since low platelets and Sjogrens go along with lymphoma, he mentioned that if I wanted to I could check further for lymphoma with a bone marrow biopsy and CT/Pet scans. But if they find indolent lymphoma, he said, you then have to decide what to do. (treat or watch and worry) He had another patient who went through all of the scans and they found a bit of lymphoma. She chose to treat it with the infusion drug, Rituxin which takes out the B cells. The treatments did nothing to fix her low platelets. I asked did it clear up the lymphoma? He said he didn't know, theres no real way of knowing for sure except to do more CT/Pet scans. So for me, since I don't have classic lymphoma symptoms, it seems like going down a rabbit hole. good luck~ Hope you find your answers!
Thanks so much for this poseymint! Food for thought there about the indolent form and whether it's worth knowing or not. Is it worse to know and then be watching and waiting and losing quality of life worrying etc. I know for every person that answer will vary. Sending you positive thoughts! xxx
Thank you Insomniacette, yes its a big decision whether to search for lymphoma also because the CT/Pet scans expose the patient to a lot of radiation. best wishes! (*_<)
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