Being treated for Splenic Lymphoma but positive for APS antibodies could it really be APS?

[MerrittM]

I am a 45 YO woman who's father died of APS and Lupus. It was not dignosed for 17 years and many of the symptoms were treated as other diseases. I have been diagnosed with Marginal Zone Splenic Lymphoma with strange infarcs (blood clots) on a giant spleen. Bone marrow biopsy reflected abnormal B-cells so that led to lymphoma diagnosis. Also receiving warfarin as a precaution as a results of those infarcs. Recent bloodwork has reflected both antiphospholipid and Lupus antibodies at different times. Prior to this event was never tested for APS. Both were detected prior to chemo. Doctors (oncologist and rheumatologist)say that bloodwork may be false positives due to the large spleen/lymphoma. After warfarin and 1 round of chemo spleen shrunk to apparently original size. So no way to know if it was the warfarin disolving clots or the chemo. Have had two rounds of chemo and both times doctors are suprised by how I react to the treatment. My question: Can APS mimic lymphoma? Am I being treated for cancer when I really have APS? My doctors all are minimizing the possibilty of APS but am thinking that they do not want to change diagnosis as that would open them up to questions of misdiagnosis. Am not getting good answers and doctors keep changing their stories. Thoughts?

[jessielou]

Hi merritt

welcome and glad you found us. Sorry to hear what brings you here and that you been so poorly. So sorry about your dad!

Im no expert but think maybe a referral too professor Hughes or Dr hunt at st thomas's might be an idea. That is if you in the uk . If not ask for second opinion if you can.

I have done a little research into splenic lymphoma and aps. there have been instances of splenic involvement in aps. But very rare apparantly.

I would definately continue present treatments and go looking for more answers.

I hope you feeling well at the moment. Sorry not much help. But here if you need to rant, have a moan or just say hi!!! You are most welcome!!

Take care big but gentle hugs sheena xxxxx jessielou xxxx

[paddyandlin]

Hi merritt

welcome to the site i agree with all that Sheena has said and would also recommend a referal to st thomas see the aps docs there,

paddy

[daisy11]

sorry to hear about your complicated conditions - like myself - in March had spleen taken out - no proper anticoagulation even though I kept saying to the Haem that my mother had passed away due to Lupus/Aps as a result of taking Warfarin which made her bleed, so now, I am on the ball and keep asking questions. I think they are completely fed up of me being complicated, I have had Chemo all sorts and they just keep coming up with things which I know is wrong. Because of being put on Warfarin and Clop after having op I am experiencing alot of symptoms, headaches, pins and needles, numbness etc and now I found out its to do with low INRs which the hospital did not tell me about at all, so now I am paranoid about INRs. Prior to the op I have been on Aspirin for a good number of years with no probs - occasional headaches, pins and needles, but nothing like I am getting now. In April suffered a TIA where I lost the sight of one eye and fortunately it has returned to normal but Eye Infirmary told me it was to do with a clot. Trying to fit hospital appts in every week and having bloods done at GP is quite time consuming and it wears me out.

I am now being referred to St Thomas and I cannot wait.

I am currently making my list ready of all the questions I want to ask because when I talk to Haem here they just listen but do not actually put anything into action. My GP is great and she says that they (drs) should make a plan.

Waiting patiently for that appt to come through the letter box!!!

I would ask to be referred because they are brilliant at St Thomas (I was diagnosed with Lupus in 1980s at St Thoms)

Good Luck