Lupus and Breast Cancer

[awareness75]

I put a post here on this subject a while ago, looking for anyone who had both. There wasn't anyone directly, maybe that's changed now.

I'm just sounding off because I'm on my 4th chemotherapy round, which involves my Nemesis: Steroids.

I don't tolerate them very well at all. I had to struggle just to get my Prednisolone changed to red coated ones. The general white ones cause me stomach aches.

I'm on Dexamethasone as part of this chemotherapy treatment and was wondering if anyone else is taking these? Does anyone have any tips on how best to take this?

I take them with food but it doesn't make much difference.

I've told my Oncologist about how these effect me, but it just goes over his head and he's just focused on the treatment.

My Rheumatology Consultant knows how they effect me but I feel she doesn't want to get involved because she thinks it's being taken care of by Oncology and not her field 😕

I feel like a piggy in the middle with nowhere to go and a sore tummy. ☹

I'm seeing the cancer unit doctor tomorrow, just to make sure this sudden overload of steroids hasn't caused any issues with my stomach lining.

Any advice or thoughts appreciated. 🙏

[AgedCrone]

Are you taking anything like Tamoxifen yet……after breast cancer I found that caused abdominal pain & my gynaecologist in combination with my oncologist took me off it…but that was 2+ years after surgery….& they were satisfied it was safe to do that.I can’t take steroids at all. ……I do hope you are able to get a medication (oops) that you can tolerate

[awareness75 in reply to AgedCrone]

Hi. No, I'm just currently on Docoxatel.

[weathervane in reply to awareness75]

Im sorry to hear you are going though this , ihad a lumpectomy last year with radiotherapy and Anastrozole for 5 years, no chemo. I get rituximab for Sjögren’s which involves a steroid infusion , I found this hard on my stomach, i was changed on to lansoprazole and gaviscon advance which has helped. I hope the oncologist has more advice for you as you shouldn’t have to go through this as well , best wishes 🙏🏼🙏🏼Xx

[AgedCrone in reply to weathervane]

As I said to awareness..I had really bad stomach pains from Tamoxifen….which does the same job as Anastrozole…& it took a gynaecologist to sort it out. …it turns out these Hormone based drugs can thicken the lining of the womb,& that caused my pain.

[awareness75 in reply to AgedCrone]

Just goes to show that one consultant can't sort out all the problems. My frustration is that I wish some of them were more mindful to keep the patient’s health history in the foreground and liase where necessary with other health professionals. You can't switch off existing LTHCs.

[AgedCrone in reply to awareness75]

I made a point of being very friendly with my oncologist’s secretary….& she made sure the doctor read my letters…but in fact she was very pro active & followed up for ten years.In fact although I’m over the age for regular Mammograms I’m off for one next month.

They aren’t pleasant, but I reckon better safe than sorry.

[awareness75 in reply to weathervane]

I don't have a very good Oncologist unfortunately, but I'm hoping to get a solution somehow.I had Rituximab some years back, but had a bad reaction,so can't have anymore of it.

I'm actually having steroids 3x over; Cancer, Lupus and eye drops for Retina Detachment. I heard sometimes eye drops can cause stomach aches too. Wish I could find out which one is the culprit.

[AgedCrone in reply to awareness75]

Have you spoken to a pharmacist…they are the specialist to sort out drug contra indications? When I had Shingles it was the Pharmacist who diagnosed I couldn’t have a certain anti viral because of a certain drug I was on at the time.My GP wan’t too pleased when I told him…but he did speak to the pharmacist & they sorted it out.

[awareness75 in reply to AgedCrone]

No I haven't, but I will tomorrow whilst I'm there. Thanks for that.🙂

[weathervane in reply to awareness75]

Have they done any investigations, endoscopy maybe , or is it too risky while you’re having treatment?

[awareness75 in reply to weathervane]

No. I'm just flagging this up to them now. Will see the outcome tomorrow.

[weathervane in reply to awareness75]

I will be thinking about you 🤗🤗

[awareness75 in reply to weathervane]

Thanks 😊

[SLS2103]

I had breast cancer 6 years ago. Am on Tamoxifen and just started methotrexate and folic acid right now.

If you're still in arrive treatment for bc, try the bc nurses. Or even Breast Cancer Now website ot phone number, I found their nurses really helpful.

[PositiveT]

Morning. After reading your posts I wanted to wish you good luck with today and please continue to challenge why you have stomach pain, someone will listen with persistence. Keep on going you are doing really well.🌻

[LTLL]

good luck today 🙏

[glasgow-girl]

I was diagnosed with Lupus 1996 + had stage 3 breast cancer 2003. Chemo is hard. My Oncologist reduced dosage of chemo slightly because of my Lupus. There was a lack of consult with rheumatologist who was shocked by bloods and pulled me off immune suppressants.A friend (health professional) told me to push for the better anti-sickness medication.

You need the best stomach protection tablets available. There is an element of having to hunker down and get through it. I hope you recover a bit between treatments, though I found the last few the hardest. Good Luck.

[awareness75 in reply to glasgow-girl]

I can relate to what you're saying. That's why I want my Rheumatology to just keep watch silently in the background. I think if there was a fight between Oncologist and Rheumatology who knew more about steroid usage, I would wager Rheumatology would win.🙂I'm at work in-between treatments and want to carry on normal day activities as much as possible, so you're right, it's important to be in the best shape you can be without niggles and grumbles.

[KayHimm in reply to awareness75]

It shouldn’t be a fight. The doctors should be working together when needed. When I was treated for cancer, my rheumatologist sent relevant blood tests for the oncologist to see. He called the radiation oncologist to discuss the safety of my photosensitivity.

I think you will feel more comfortable- I would - if your doctors talked about your case. Your rheumatologist will not want to weigh in on the steroids as cancer protocol but could discuss the complications you are known to have.

Cancer treatment in a lupus patient is going to be more complicated. This has to be in the back of their minds. It was even with me with and I am mild UCTD. Doctors assured me they had treated many women on way more medications than I am on - and they got them through.

You are going to be fine. You need a extra help and doctor communication.

Xx K

[awareness75 in reply to KayHimm]

I echo everything you've said and wish I had the same.

[glasgow-girl in reply to awareness75]

That is so hard, having to work in between treatments. I am glad you have new medication to help with the future rounds. If you can mitigate the steroids a little that would be good. I always thought those steroids, a few days after chemo (for me), were meant to protect from the shock to the system. Hope you cope with the next couple and wishing you all the best. Xx

[awareness75]

Quick update. Saw the doctor today. He said it is the treatment causing the gastro problems and Docoxatel usually does. Gave me some Buscopan (anti spadotics) tablets and treatment for dry mouth/ulcers. I feel a lot happier and better prepared now going forward for 2 more rounds soon. Forewarned is forearmed, especially when it comes to Lupus and cancer. The symptoms are so similar, it's hard to tell them apart. Hopefully now I can also manage the steroids better.