I was diagnosed with Leukemia (CLL) in December and had to start chemo right away due to really swollen lymph nodes. About half way through my chemo, I started getting several joint pain. I ended my chemo last Wednesday and the doctor sent me to a rheumatologist to find out what was going on with me. The results came back yesterday that I also have Lupus. It was a blow to me because I've been dealing with the cancer. I haven't even found out if Im in remission from the chemo yet. Does anyone also have Leukemia in this group? What can I expect with having Lupus? How can I make things better for myself doing a flair?
Jennifer
Jennifer
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momof12
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I'm sorry that you have received a lupus diagnosis on top of your leukemia. It is difficult to say what you may expect from lupus because it is an unpredictable and incredibly varied illness which affects everyone differently. If you would like more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
It is important to try to avoid potential triggers for flares such as exposure to UV light and stress. If you are experiencing the onset of a flare it is important to let your doctor know as they may wish to temporarily adjust your treatment. You should try to avoid lupus triggers and rest when needed.
Hi sorry to hear that but your treatment may be a trade off rituxan is a chemo drug and its usevis to treat leukemia and systemic lupus aggressively so you may battle the two with one drug to help with both. Just something to think about wishing you all the blessings to beat the both of them good luck with recovering and going into remission. Thanks for letting me share
Hello momo...Jennifer...your post takes my breath away...I could just say something like: you're going through a lot!!!!! But that's an understatement. Am sure you'll get some good replies...I just want to welcome you: this is a wonderful forum...the solidarity is better than any lupus forum I've visited...I've now been here for years and continue to benefit enormously
Do you live in the uk? If yes, then your oncology team & rheumatology should form a MDT (multidisciplinary team) along with any other NHS professionals who can contribute substantially to your care eg physiotherapists etc. As I understand it, this is a standard approach to caring for cancer patients. I would think the rheumatologist you've seen will be liaising already with your oncologist re treatment & monitoring. Possibly you'll also see immunology...alongside my infant onset lupus, I have an early onset PID (primary immunodeficiency) which means i have trouble with the cells in my bone marrow doing their work properly, and am benefitting enormously from immunologic investigations & treatments
The Lupus Uk website includes good all round info on lupus:
Hello, and welcome. I just wanted to say that I had the reverse experience in a way - already being a lupus patient of many years, when I had a lymph node biopsy because of hugely swollen lymph nodes everywhere, I was put on a treatment that works for both lupus and Hodgkins lymphoma - Rituximab. I wouldn't be surprised if your chemo cocktail contains Rituximab.
Barnclown and I both agree on there being a cobwebby relationship between some forms of cancer and lupus.
Goods luck with the meds. Let us know how you go on. Hugs in solidarity 👭
I have severe joint pain and fatigue as part of my flair. Things I thought were from the chemo the specialist is saying is from the lupus (hair loss, mouth sores,etc) .
If they have diagnosed you with lupus it will be because of specific blood work results - anti-dsDNA or ANA etc. .. because mouth sores, hair loss and fatigue are definitely chemo related too.
For me Ritux worked like a dream almost immediately. I mean it isn't an easy drug (it is cytotoxic) - but I am so much better on it.
I think it's a good thing that the lupus has been picked up so hopefully no one will ever ignore the seriousness of your symptoms. Did you ever have lupus like symptoms before December?
I had ritux as part of my chemo for leukemia that just ended last week. They diagnosed me through blood work. I think its good that they found it to since it is separate from the leukemia. The doctor says they have to be careful moving forward with my treatment and always take the leukemia in consideration while treating me.
I was diagnosed with an autoimmune disease over two years ago. Sore joints, fatigue, rashes, tremor, raynaud's, a whole chorus of symptoms, so my docs called it Lupus (seronegative), 6 months ago my perfect bloodwork went wild...platelet count1,000,000, etc. the additional diagnosis by gene test was chronic myeloid lukemia JAK 2. I started on chemo by pills, Tasnigia 200 mg twice daily . The lupus must have been attacking the cancer, too, as I went into remission after only 6 months. i must remain on chemo forever, as it is chronic. Suddenly my lupus returned ( I stayed on 4 mg prednisone and 400 mg plaquinal every other day. I went back on Plaquinal every day and will have to raise prednisone. I thought the chemo would dampen it, but no luck. Back to rheumy.
I have Leukemia and Lupus. It is a frustrating road. I don't know what to tell you. I think you just have to try and keep Lupus in check.The Lupus is probably the most devastating diagnosis, as there is not much relief.
Hello Rachael. I'm glad you found our wonderful forum. discussion about cancer & lupus is especially important to me, because of the unusual nature of my combination (autoimmunity & Immunodeficiency: infant onset lupus + hypogammaglobulinaemia). I am a cancer survivor. And all my multisystem clinics are monitoring me regularly for cancers arising.... and my SLE went without daily systemic treatment until 6 years ago in my 50s (long story). Rheumatology's daily oral combined therapy lupus meds are giving me significant relief. I very much hope your lupus meds are too. I can't help but imagine managing your leukaemia treatment plan alongside your lupus meds must be quite a juggling act. Am wishing you every best wish
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