Hi, at present I have sle, scoliosis, costchondritis and arthiritis of the jaw. I have recently gone on to see a ENT consultant for what I thought was an ear problem. How wrong was I. I'm having a ct scan and see consultant within 4 weeks for results for cancer in lymph glands.
Can I ask if anybody knows if this would be lupus related. I'm out of my mind with worry as my health is just getting worse all the time.
I am 34, married with two boys and although I have good family support I am really struggling at the moment.
I would appreciate any advice.
Thank you for reading.
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mummyswift
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Hello - you are having a horrid time, by the sound of it. I don't know what I can say to you that will make it better. Can I ask - are you taking mycophenolate for your lupus? Lymphoid cancer is on the list of side effects for this drug.
Thank you for your quick reply. I'm not taking mycophenolate, I am treated for lupus at the royal London hospital for intergrated medicine. I only use conventional medications as and when. Maybe I should look into my homeopathic meds.
Oh poor thing you really are going through it arn't you. Just a good job you did go & get the scan. Wouldn't have thought it was lupus related but then it's such a nasty disease. It's more likely it could be from drugs you've had. A lot of the meds they use causes so many problems. Azathyoprine is one that is known to cause cance.How long have you had lupus ? I so hope you get treated soon. God Bless, keep your chin up. It's so good you have good family support. x
Hi,i,m sorry to hear that,my mum was diagnosed with cancer of the lymph glands in 1997 a few years before she got lupus diagnosis and at present i,m trying to find a link between the two,she did keep a diary for health and medical reasons,which i spend a lot of time looking at,to further my knowledge of lupus,i,m here if i can be of any help x
Don't know how relevant this is but Sjogren's is a risk factor for lymphoma and Sjogren's is closely related to Lupus. You may have Sjogren's as well.
Also, lymphoma is treatable and survivable so DON'T PANIC!
Plus, even though I'm a fan of complementary medicines and avoiding drugs as far as possible, I fear you may have to slacken your principles in that regard. I've had to. And life would be unbearable - perhaps even unsustainable - without some of the drugs I'm on. My partner too - tho for completely different reasons.
The good thing though is that your doc is an integrated medicine practitioner so he will be well aware of drug 'nasties', interactions and such and will be able - and motivated - to prescribe you the least toxic ones. Good luck. And DON'T PANIC!
Thank you everybody for your advice. I have only been diagnosed with lupus 18 months ago, however I have had the symptoms for about 5 years. I haven't heard of Sjogrens but I will look this up. I get the results of my ct scan before I next see my consultant in London, so Sjogrens is something I will def ask about. Maybe I should ask about conventional meds at this app too. Can anybody offer advice on what meds I should enquire about?
Dear Sweift , Coppernob is right , don't Panic , in this disease we have to trust very much on God , and intrestingly we meet(and we met) with a very different / new situation every day .
My wife ,33 with two boys 10 & 9 , was diaganosed with Sle about 3 years ago,she had symptoms for about 4-5 years , innitialy it started with lymph node swelling in ear & neck area, Sjogern, Teeth decaying , joints swelling ,all these symptoms with others lasted for about 3 years.And lastly it got swear with fluid retaining in lungs at this stage ,reports showed she had Sle , Lupus Nephritus ,Kideneys very much effected. Innitially she got iv solumedrol, iv endoxin She is now on oral Myco,Plaquanil,prednisole,vit. And with lot of other sister diseases of lupus mean effects of lupus like Endometroises.Clculi in both kidneys etc
Hope , your lymph node problem is with Sle instead of Cancer .And my opinion is that this may be due to Sjogren !
Hi- new to this group from Tampa Florida , yes a male with sle and I was diagnoses with same lymphoma as well. That was 7 years ago! Little rough in the begging but you have a better that average survival rate. Positive attitude , eating when you don't want too, praying for make n sense of it all family friends n humor!! That will get you thru!! + thoughts n prayers coming from the US!! David or on Facebook as Joey Baggadoughnuts
It's a long way, I can scream louder if you can't hear me! Being all the way over here in the states. Lupus hasn't taken my voice. Lol do you guys know lol ? Lol I'm kidding, hasn't taken my humor !
You are in my thoughts and prayers and I can emphasize on what you are now going through. It will be 3 yrs at Christmas when I went through the same thing. It affected my left jaw and lower ear, it started with my ear 'popping' especially of a night, my jaw aching and was swollen with glands - that I for months. it was painful as well. I was sent to a 1st ENT who said that i had had singles of the middle ear. He was wrong. I was sent in tears by my GP for a scan and biopsy for lymph cancer.
It was a very long and stressful wait. I had a lot of scans and when the lady came to do the biopsy she said that she could not do it as there wasn't any 'clusters' and nothing to take a biopsy from. I was very lucky. 2nd ENT specialist and oral dentist diagnosed with TMJ which still flares up from time to time. At this time I was not diagnosed with Lupus SLE but had been diagnosed with SS and was not on any treatments.
I am on 200omg per day MMF, 5mg steroid and other medications. With ALL medicines there are side affects - and I have read recently won Lupus (American website) that recent research into suppressants and cancer are very very low. Infact MMF and some of the others actually reduce certain types of cancer. The stats were that between 10 and 15% chance of developing cancer (which is deemed low) than the average healthy person.
It is my worry that people feel that due to the meds and lupus that there is a strong chance fo cancer. Anyone can develop cancer and they don't have to have lupus.
My uncle was diagnosed 3 months ago with non hodgeson's lymphoma and has never had a days sickness or needed medical assistance before now.
If on any treatments for Lupus regular blood, urine and blood pressure checks are completed, for me, every 4 weeks and this is to monitor any changes within the blood etc. This is also to check for anything that may be suspicious.
Unfortunately, even though the medical profession, researchers all over the world are trying to find cures and treatments for auto immune disorders of all kinds - this can be a mine field.
The medication that I take daily have allowed me to have some quality of life and enable me to function.
As with any healthy person, I ensure that I attend regular smear tests (yearly), check my breasts and look out for signs or symptoms that are not familiar to me.
I wish you all the love in the world and hope like me that this is TMJ. As the former post has advised the success rates in treating this form of cancer is exceptionally high.
Mummyswift, so sorry to hear that. Life sure can be a bitch at times and it's especially upsetting to hear when the person is reasonably young and raising a young family to boot. There's nothing I can say to make it better but I do send you a big hug in commiseration and wish you all the best. Please let us know how it goes in due course. oxo
Will be thinking of you and hoping for a reasonable diagnosis. Sounds as if you have a good support system.
I was diagnosed with lupus fifteen years ago. Gradually got worse, and then very bad when I was diagnosed with breast cancer. Probably stress. Treatment wasn't actually that much worse than when the lupus was flaring! Now I have been clear of cancer for three years.
Sorry I haven't replied sooner, I've been having a flare. Thank you for all your kind words and advice. I have my scan on 30 Oct and results on 21 Nov, so thankfully I won't be waiting for results to long. Xxxx
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