SLE and cancer risks

[Starbright3x]

mrslupus.blogspot.com/2011/...

I found this article interesting, as us Lupie's seem to have issues with low platelets, white blood cells, and other blood disorders.Give it a read if you have time.

[EOLHPC]

thanks starbright.

i like to keep my eyes wide open on this subject, having had drs & co misdiagnose a rare tumour of the cartilage as arthritis until it became malignant...this took 14 years...then a brilliant nhs ortho surgeon recognised this chondrosarcoma and performed an urgent amputation in '98. at the time, my infant onset lupus had been lost. but i was rediagnosed in 2011.

now i'm 61, well experienced in lifestyle managing my version of lupus, sjogrens & various overlapping associated multisystem conditions, + feeling better than i have since the 1970s thanks to mycophenolate.... and making the most of this while i can

but my sjogrens is particularly active, and i've always had just below normal in lymphocytes, complements & gammaglobulin G....all of which add to my typical lupus predisposition to persistent recurring infections.

recently drs at my rheumatology clinic's metabolic bone unit spotted that i've developed full on hypogammaglobuinaemia (with significantly low IgG, IgA, IgM). so have been referred to immunology. this is ok...i've been undergoing regular tests to watch for various cancers at various clinics for years. and that experience of that malignant tumor had helped me a lot to live with this predisposition... + i know that these days many cancers are manageable and can be lived with.

whatever, my consultants have had me stop daily hydroxy....i'm lifestyle coping with out it, but am missing it! i understand that in rare cases, myco has been implicated in hypogammaglobulinaemia, but so has my alternative (rituximab). so, my eyes are ultra wide open on this subject at the mo. and i'm v glad my various nhs clinics have been & still are taking my cancer risk seriously (e.g. am about to undergo cytoscopy with general aneasthetic due to concern a lifetime of recurring persistent UTIs having particular lab results (which now involve my kidneys) which indicate these may have caused cancer in my urinary tract.)

I understand the facts that I am a DES baby, and have close family history of various cancers, +the fact that my version of lupus went without daily systemic treatment for 50+ years makes my cancer risk even more great...but, hey, life is for living, and i've already beat cancer once...so i try to take this risk in my stride...and i get huge inspiration from hearing how others on this forum have coped with cancers over the years... so will be following this post of yours, hoping others will add their experience of cancer...

[Tinat3 in reply to EOLHPC]

Oh my Barnclown. What a terrible experience you have had. I wish you the very best with your health x

[EOLHPC in reply to Tinat3]

Thanks tinat...forums like ours help me keep my experience in perspective...I know for sure that I've had it all relatively easy...but even so, I realise I have endured enough that is tough to be able to encourage others to keep as calm as poss & carry on: things can & do get better and go well...so if/when things go badly, try to stay open minded

Take care xo

[bluebell99]

I took quite a high dose of azathioprine for about seven years, not only for the SLE but for auto-immune hepatitis as well. It was wonderful for me, I tolerated it well and it made me feel alive again. My brain was so unfogged I even managed an OU degree.

However, it dampened down my immune system so much that my body didn't spot the rogue cancer cells in my kidney. I was told to stop the aza at my diagnosis so my natural immunity would help in my recovery. Two ops and four years later and I am fine now, but I do miss the aza even now. No chance of course of being prescribed it again.

I was told that we all have rogue cells in our bodies and that normally they are recognised by the immune system and dealt with. Cancer comes when this is disrupted through illness, lifestyle, genetic predisposition or accident.

Just to clarify, the aza did not give me cancer. The rheumy said I was unlucky and renal cancer is not normally associated with SLE.

We are in between the devil and the deep blue sea when it comes to immune suppressants.

[Sallyk21]

I've had lupus for 32 years and was recently admitted to the rheumatology ward as I'd hadva persistent one sided headache for weeks. My rheumatologist initially thought it was vasculitis connected to lupus, however after a routine examinination they found a breast lump. Unfortunately it turned out to be cancer and the headache is secondary breast cancer which has gone into the base of my skull. I did ask the doctor if it could have been caused because I've been on azathiaprine for 32 years and she did say this was a possibility! The other problem is that as my immune system is suppressed by the lupus drugs it will be difficult deciding on the cancer treatment. At the moment I'm crossing my fingers and hoping there is something they can do.

[Starbright3x]

Barnclown, Bluebell and sally, I am sorry for the health issues you are all dealing with.It is always in the back of my mind, as my grandfather died from Aplastic Anemia,my Aunt from leukemia, and my cousin now has Multiple Mylenoma.I dont do the biologics ( I think that is hat they are referred to?), as the blood disorders run fairly high on both my mom and dads side. (My moms brother passed from some kind of blood disorder two years ago also).

Since we already have compromised immune systems, are the Methotrexate, Humira's and all those really that safe to take long term,or if at all? Do the pro's outweigh the con's? I know these medications have helped any tremendously, but I dont know if there is enough long term information about them, as they are relatively knew medications (last 25-30yrs or so).Thoughts welcome,as discussions in forums are some of best places for us all to learn more

[EOLHPC in reply to Starbright3x]

Starbright, I like the way you're looking at this. And I think you're asking the right questions...and I wish you as well as possible

the risks of long term steroids for lupus are well known because these have been prescribed for decades, but the risks of meds like myco are less well known because prescribing myco for lupus is a relatively more recent phenomenon. This is one reason why I am glad to be on myco and in the BILAG research project (this is a UK based group of lupus experts led by Prof David Isenberg that has been studying how disease activity can be accurately measured in clinical practice and also in clinical trials. This has been a long process of evolution, constantly refining the measures we use to quantify disease activity. The BILAG group is also a very cohesive group of lupus clinicians that has collaborated on many other studies). I am being monitored carefully...so at least my experiences can help understand more about lupus treatment with myco

meanwhile the consultants at all the different clinics I attend regularly are also monitoring my condition from various aspects...and we're ready to make any necessary adjustments to my various treatment plans. Isn't this true for most of us

This past 18 months on the relatively low daily dose of 1000mg myco has seen me feeling so much more resilient, with so much more stamina, and with my chronic neuro cerebral symptoms more tolerable than they have been since the 1970s....but even so, I'm ready to try a change of meds if we decide the risk/benefit balance requires this....and maybe somehow or other, for me, there will more of these relatively good years to come. And I very much wish these relatively good years for all of us

XO

[Fighting in reply to EOLHPC]

The doctors have never offered me the newer medications. It's Plaquinel and Predisolone. I am told I have severe osteoporosis, with very high risk of fracture. One shoulder prosthesis is out of it's socket with no available medical intervention. I am on Forteo for the 2nd time. Cytoxan brought the kidneys back on line in the late 90s. I was supposed to be in a low risk category for the bone and eye problems but they both happened. I wonder what would lead a doctor to switch to the newer biologics.

[EOLHPC in reply to Fighting]

You've been through an awful lot...am very much feeling for you

I have heard of one USA lupus patient who is currently on mycophenolate cellcept like me...she had SLE diagnosed years ago. I think she lives on the east coast. In the UK, myco, as I understand it, is simply considered an 'immunosuppressant transplant med'...and it is mainly prescribed for transplant patients but is also prescribed for rheumatoid arthritis, and even more recently for systemic lupus

[Fighting]

Very informative article.

[tilde]

It was interesting reading this article.About a year ago,i was diagnosed with bone marrow change in my left knee.After several MRI i know now that i have diffuse bone marrow change,just beginning to spread to the spine.Unfortunatly no-one seems to know why it's happening and my doctors said that they have contacted ST.THOMAS to see if any doctor at the lupus clinic,had come across to somenthing like this before.ONE of the doctor indeed replied to my doctors by saying that he has come across many cases o people with lupus with this problem,but that is not serious.I would like to ask to DR.D.S. how many patients he has treated with this condition and if he can quantifie the number of patients because after a long search on the internet i have come out with 3 cases :ME,MYSELF and I, but i could be wrong.Any help is really appreciated.