I was recently diagnosed with non Hodgkins Lymphoma. Is there anyone else in our group with APS and non Hodgkins Lymphoma?
Also of note....back in 2018 when I was first diagnosed with APS I asked the hematologist if I might have Lymphoma as I saw a correlation between the 2 in my research online. I now have read that Lymphoma may cause antiphospholipid antibodies. So I wonder which came first. My Oncologist said we may never know.
Thank you ♡
I am sorry to read this news. I have also been diagnosed with non-Hodgkin lymphoma.
There is an association between SLE & other autoimmune diseases with MZL. I had high immunoglobulins IgM, low IgG, IgA was normal then abnormal. This isn’t uncommon in SLE. It was only when my rheumatologist investigated ie bone marrow biopsy was it diagnosed.
I have mild APS. Mine is related to SLE. It’s Marginal Zone Lymphoma.
What type is your lymphoma?
With good wishes,
Ros
Hello Ros, Thank you for your reply. You and I connected about our lymphoma 4 months ago. As you can see I am still in my research and education stage. I am now seeking information about any complications or changes in protocol due to being hypercoagulable. I have my first 3 month check up 2/25/22 with the Lymphoma specialist at the Mayo Clinic so I am creating my list of questions in preparation. I am still on w&w and hope to stay on w&w as long as possible ♡♡
I do remember & hope all goes well for your appointment.
Thank you ♡♡♡
mayoclinic.org/diseases-con...
I put a link on from the Mayo Clinic just for my reference and others.
I’m awfully sorry that you are dealing with this.
I had to do a quick read about this.
So is it your B cells or T cells in your particular case the problem for you?
Hi Kelly, it is my B cells and is currently indolent (slow growing) follicular. So it is not currently curable but it can be treatable. I am worried about the treatments triggering CAPS or my EBV reactivation when they suppress my immune system. It's not easy being a unicorn. ♡
Have you ever been prescribed autoimmune suppressing medication for either APS or any other autoimmune diseases you may have? ( forgive me I’m sorry I do not know if you have SLE or or? )
Also - if you see lots of edits with me, or misspellings- know I’m having troubles with my vision lately! ( not day drinking 😂🥂🍸, although might be a more interesting explanation 😊.)
HI Kelly, no worries about the edits. My thumbs are have a mind of their own. I am on hydroxychloroquine, aspirin, and eliquis. I will explain why I am on eliquis rather than warafin. I am unusual in that I lived the majority of my life (30 years or so) with an occluded femoral artery. Doctors brushed me off my whole life about the calf pain while walking. "Stretch more" "your calves are muscle bound" "you are too young for intermittent claudication and PAD". I even played soccer for 3 different teams with it. Then one day someone finally listened to me and did an ultrasound of that leg. Then I had angioplasty and stenting. I have never had a definitive clot. I walked without pain after that. I assumed all the marathon runners and other atheletes all dealt with calf pain like i did. Mayo agrees that although I am triple positive for APS I don't fulfill the criteria. I also have Undifferentiated Connective Tissue Disease. Both are very well managed and I am 90% asymptomatic. Then boom. Cancer.
Sounds very reasonable to me.
I was curious about suppression medications in particular, and your concern with CAPS.
Be sure and have your doctor tell you if your T cells should be enough to help out with that. Hopefully treatment would not compromise bout the T and B cells by substantial amounts?
I am hoping to tackle this topic this Friday at Mayo. I will let you know!
Please can I ask what symptoms led you and your doctors, to your final diagnosis?
Hello Wendy!In June I noticed a persistent single swollen moveable lymphnode in my right armpit. Not painful, not hot. I told my primary doctor, he ran blood work, all was normal.
My mother is a breast cancer survivor (she caught it when it was tiny) so I asked my primary to order a mammogram, ultrasound, and breast mri. All 3 showed enlarged lymohnodes in my armpits. I went to my hematologist/oncologist for APS and he said it was most likely nothing. He said they may go away and to get another ultrasound in 6 months. I then felt an enlarged lymphnode in my groin. That week I went to my primary doctor and expressed that I was concerned this may be my only symptom of cancer and I felt like we should investigate it. He agreed and ordered a core needle biopsy.
The pathology reports confirmed diagnosis of Follicular non Hodgkins Lymphoma stage 3 grade 1-2.
I went to the Mayo Clinic in Jacksonville to see a Lymphoma specialist and had a radioactive sugar pet/ct scan. Lymphnodes lit up in my chest, abdomen, and one infront of my ear as well. Then I went to the Moffit Cancer Center in Tampa for a second opinion. I just had my 3 month follow up at the Mayo Clinic. I am on "watch and wait". This type of cancer is very slow growing (unless it transforms into the aggressive form). It is not treated with chemo or monoclonal antibodies until it causes symtpoms or pain. The longer I can stay on watch and wait the better. I will get blood work done every 3 months (important to know that this type of cancer of the blood and lymphatic system does not often show in blood work - all my labs are normal). I will also get a CT scan every 6 months.
I have attached a photo of my pet/ct scan. Fyi the bladder, kidneys, ureter, heart, and brain all light up on the scan because they are metabolizing the radioactive sugar. (That's normal.)
Let me know if you have any other questions.
♡irene
Thank you. I am a breast Cancer survivor. My brother died from multiple myeloma so I am constantly being checked. I was just curious but I will keep you in my thoughts. Xxx
Thank you, stay vigilant. I had to push for the tests and biopsies. The radiologist erroneously stated in the reports that the lyphnodes were most likely reactive lymphnodes due to mixed Connective Tissue Disease, which I don't have. I have Undifferentiated Connective Tissue Disease which is completley different. I called my rhuemetologist and he said neither MCTD and UCTD would cause swollen lymohnodes. So that was a dangerous assumption on his/her part. Even the specialist who performed the biopsy said "this is most likely nothing".
My gut was telling me that it was cancer and to keep pushing.
♡irene
Thank you for telling your story. This is interesting as I also in December just suddenly had a lymph node in my arm pit become extremely enlarged, same as you, no pain, moveable and no where else… I ignored it for 2 months then went to my GP. She shipped me off to the breast cancer centre for a mammogram and ultrasound, as again same as you just mother is a 3x breast cancer survivor… they said it was just an enlarge lymph node, nothing to worry about, probably just from the Covid vaccine and it’ll go away… 2 more months later… it’s still there and I’m now starting to feel even more tired and poorly than I was before… maybe I need to go back in and insist on more tests. Problem with the UK NHS system right now is that you have to wait months for any appointments unless it’s urgent.
The LLS (Luekemia and Lymphoma Society has a survey out right now that I am going to complete tonight. There has been anecdotal stories of people's cancer being activated by the vaccines. I think they are looking for data.I hope yours is just a reactionary lymphnode. If you do have lymphoma and it is just a single lymphnode it may be curable with radiation. Mine was stage 3 by the time I got my biopsy. (Stage 3 just means pn the right and left and above and below the waist)
♡♡♡♡♡♡
Looking back now that you have a diagnosis, did you have any other symptoms that are clearly the lymphoma vs the APS?
Hi there! I just saw your message, I must have missed the notification in my email!!I have thought about this for some time. It is hard to say what was causing what. Throw in hot flashes from menopause and it becomes too murky to parse out which symptoms corresponded with which disease.
Is there something more specific you would like to ask.
♡irene
Just if any there were any clear symptoms of the lymphoma other than the enlarged glands? It’s ok if that’s too vague a question to answer. 😉
And did they stay enlarged or did they go up & down? The one in my armpit that was absolutely huge… has now gone down but it took 4 months. And I don’t seem to have any others (not that I’ve clearly noticed) that have enlarged…
I’ve been referred to haematology to check for lymphoma or other types of blood cancer … but of course they’ve cancelled my appointment and not given me a reschedule date.
Oh ok!The only symptoms I had/have are an enlarged non painful moveable lymphnodes in my armpits and one in my groin. Those are still the only symtpoms I have. With lymphoma the lymphnodes wax and wane. I have days where I don't really think about them and days where it feels like my shirt is bunched up in my armpits or like I am about to pull my groin. I also have a visible one near my ear now. All the others are inside my abdoben and chest and are only visible on the pet scan. Are you able to locate a lymphoma specialist near you? There are over 60 different types of non Hodgkins Lymphoma. Some indolent (slow growing) and some aggressive. Hematologists and oncologist tend to overtreat lymphoma like mine when it is indolent (slow growing).
Some people find their lymphoma during imaging for something else or with colonoscopies.
The lymphoma specialists told me I would need treatment if I start having what they call B symptoms. Drenching night sweats, fatigue, bulky tumors, shortness of breath, and bone pain. Or if one of the lymphnodes starts pressing on something like an artery.
My biggest lymphnode that I can feel is about the size of large grape.
I am still learning about this cancer, so all of this is limited and is just my personal experience. Let me know if you have any other questions.
♡irene
I’m doing my best to put pressure on my GP to get me help. But I feel like I just end up going in circles for the last 18 months. And not once, has anyone run a scan on me… not even with 2 hospital stays! 😤
I have had the fatigue and bone pain for a long time now, I can hardly even sleep at night anymore because the pain keeps me awake … some days I struggle to walk my dog and When I do I’m quickly out of breath…
From my perspective this is all worrying as I was super fit, hiking 10 miles on the weekends, doing yoga 3 nights a week after work… I never say still… was never too tired to do everyday things… now just showering in the morning is daunting.
I just read your bio. You are American living in the UK. Do you have the ability to fly to the US and stay with family and be seen here?
No, I don’t have insurance in the US anymore. And my UK insurance wouldn’t pay for routine healthcare abroad, only accidents or emergencies.
I recommend you contact LLS.org the Luekemia and Lymphoma Society. They are extremely knowledgeable and are here to help!!! They called me within 2 days of me sending them an email.
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