Lupus and Radiotherapy

[jamesroybuck]

Hi everyone ; I have SLE and APS and take Warfarin ; this has been my situation for around 25 years. I was diagnosed with Prostate cancer around sixteen months ago and have been on Hormone therapy for fourteen months. I was offered Radiotherapy around nine months ago , but due to the possible side effects and my pre existing conditions , I can't make my mind up what to do.

I also have long term problems with IBD and Diverticulitis

I have carried out loads of on line research for patients having radiotherapy who have some or all of the pre existing conditions listed above and it seems that the general consensus is that the side effects for a patient with no other medical problems are significantly increased in a patient that has pre existing problems.

If anyone out there has found themselves in a similar situation , I would be extremely grateful to hear of your experiences.

James

[Wolfie_at_the_door]

Hi James. I have no information in that area I'm afraid but just want to wish you well.

I wonder if the admin team here would have some input - there has to be some history of sle etc & cancer treatment reactions? Good luck!

[Littleandperfect in reply to Wolfie_at_the_door]

Hi… hopefully this might help . I had breast cancer6 years ago and was offered 15 intense sessions of radiotherapy which I tolerated reasonably well. However, this sparked off my lupus including a really horrific rash all over my chest arms and shoulders. I was a real mess… looked as if I’d had acid thrown over me !! Did I need the radiation? I will never know. I’m cancer ♋️ clear , but my lupus and CTD and osteoarthritis is controlled with hydroxy and steroids when flaring.. I wish you luck with your treatment and hope that this may you make your decision.

[jamesroybuck in reply to Littleandperfect]

Thanks for the reply.

[jamesroybuck in reply to Wolfie_at_the_door]

Thanks for replying.

[weathervane]

I have Sjögren’s and im on rituximab infusions. I had a lumpectomy with radiotherapy, i didn’t have any side effects other than increased fatigue and some burning. I did have to stop 6 monthly infusions for 2 rounds which was more difficult and took a while to get on to a more even keel. The oncology team and rheumatology were a lot of help.

Take care, I hope all goes well for you.

[jamesroybuck in reply to weathervane]

Thank you for the reply

[MacNeice]

Hi James, I have a relative in a similar position to you - undecided whether to have radiotherapy - and wondered how you were getting on?

[jamesroybuck in reply to MacNeice]

Hello ; I was diagnosed with Prostate Cancer almost exactly two years ago and I pretty well feel the same as I did five / ten years ago ; I feel a little tired from time to time , but I'm pretty sure this is from the Hormone injections rather than the cancer.

Just a few days ago I came to the decision not to proceed with the radiotherapy treatment on offer ; this was after a lot of research and anecdotal evidence. I regard radiotherapy as a massively toxic and archaic treatment and I will pin my hopes on the natural herbs and medicines that I take on a daily basis.

I would not want to influence anyone who finds themselves in a similar position ; my research revealed that many people who had radiotherapy were cured with little or no side effects ; it also revealed that many people had serious side effects some of which were lifelong , it also revealed that quite a number of people had cancers elsewhere in their body three to five years after the treatment.

I think the one thing that I can't get my head round is why ; after all these years and after all the billions poured into research ; the progress on effective and safe treatments is dismal. I am convinced that the big pharma companies do not want any natural cures to be found.

Regards Jim

[MacNeice]

Thank you for replying James - I’m glad you’re doing well! It’s the toxicity to other organs that’s the worry with radiotherapy, and whether it could cause a flare up. Having had a good look, I’m surprised there aren’t more studies/ research/ advice into treating cancer where lupus is an issue - a more holistic approach between rheumatology and oncology. There are more targeted / less toxic therapies - proton beam, cryotherapy, nanoknife and a type of ultra-sound - but they aren’t being widely offered yet unfortunately. As a family we all lean towards natural remedies as a foundation for a healthy life, perhaps you could share your experiences of that? Thank you again.

[jamesroybuck in reply to MacNeice]

Hello again ; thanks for your reply. I'm not religious but I do believe in God and from this I believe that all the trees ; shrubs ; grasses ; herbs and fruits found on earth exist for a reason . I believe that all ailments can be cured from these natural sources . I'm not a cynical person , but I think we are where we are with Cancer research because there are no big bucks in a natural cure.

I take two 60ml doses of Essiac tea daily ( research Rene Caisse ) which is made up of burdock root ; sheep sorrel ; slippery elm powder and indian rhubarb root . I take three capsules per day of Pro Phenol ; which contains broccoli ; turmeric root ; whole pomegranate green tea ; peppermint leaves and crushed cloves . I take saw palmetto daily and I chew apricot kernels constantly. Perhaps the most important part of this is that I have faith in them. Only time will tell

Hope this is of some interest to you.

Best wishes James