Can anyone help?

Hi there, sounds really frustrating to have different doctors not aligned.  Might be worth calling the team at Macmillan and asking for their advice. You can reach them on 0800 808 0000 from 8am to 8pm daily. Best wishes 

Thanks. I have called but unfortunately haven't had much help. Many thanks 

Hi! I also have RA and have had breast cancer twice. I’m on methotrexate to control the RA. During chemo they stopped the methotrexate as the chemo does the same job and then I restarted methotrexate after my BC treatment had finished and my symptoms returned, does that help? I’m sorry I didn’t fully understand the question but I’m happy to help if I can x

Thank you so much. I'm afraid it's a different problem but I'm glad your autoimmune is being managed.

I have ra and take methotrexate and adilimabsb injections.  I’ve had radiotherapy and currently having chemo for womb cancer (I have breast cancer as well), my oncologist said to stop the methotrexate gif radio and chemo but the adilumambab was OK.  Hope this helps.

Thanks for your response. 

It's quite the mess at the moment.  Have managed to find a couple of specialists - one with Breast Cancer experience and a PhD in immunology and another is a professor of cancer immunology- I'm waiting to see what they say.

I have done a ctDNA (looking for mutations) to explore other options such as new medication,  clinical trials or personalised treatment. 

My oncologist is unhelpful and I'm pretty much on my own. Am considering changing oncologists. Am also looking at changing hospitals.

As you can imagine I'm under a lot of stress but luckily,  am having a good response to AI (Oestrogen suppression), so have some breathing space. My rheumatologist believes all AI can trigger autoimmune and the CDK4/6 may have exacerbated the symptoms (I don't know).

Have spoken to the oncology pharmacist who doesn't think CDK4 triggers autoimmune (I've found research that contradicts that). Anyway,  need to wait to see what the second opinions are - I can't be the first person with autoimmune to have BC!

Also wait and see what the ctDNA shows, if anything. 

Hi. Sorry I cannot help with your question as I know nothing about it..

I saw you mention ctDNA. Are you using this as ongoing monitoring for reoccurrence? I have read a lot about it. How are you obtaining this? Is it the trial or private medical insurance? I would like to do this next year when my active treatment is done. I am just finishing chemo now and have radiotherapy in January and will start hormone blockers and abemaciclib too. 

It's a blood test. It looks for tumour mutations. There are two types of tumour mutations 1. Those that remain stable 2. Those due to treatment.  Some types of treatment actually cause mutations, so ctDNA can be done at certain times to check for those.

ctDNA can be inaccurate as it may not catch all necessary information in the blood. Mutations can also be checked via tumour biopsy.

It's often used for personalised treatment ie targeted drugs and to see the liklihood of treatment working. 

I had mine done via the NHS and it take approximately two weeks for results.  You can have it done privately but before you waste your money,  get advice.