I'm new to this forum and am interested in hearing from anyone who has stage IV thymoma. I have had six rounds of chemo which shrunk both the primary and the secondaries (nodules in my pleura) but the cancers have started to grow again. I'be been told experimental treatment with an immunotherapy drug may be the next step but I need to be a lot sicker (currently just have a cough).
Has anyone out there had treatment with one of the new drugs and if so - how did it go?
I'm interested in hearing from anyone with a thymoma that has spread - we appear to be a very rare breed.
Hiya Cassie sorry to hear this. I am a thymoma patient. I am on immunotherapy drugs trials at Kings. Keep strong x
Thank you Yani. I really appreciate your response.
Thanks Yani. Re the clinical trial you are involved in at Kings - is this involving Pembrolizumab? There seems to be some really negative views on this for thymoma - in that some people react really badly and their immune system turns on them. Is this something you were warned about?
No darling. After I had the operation to remove Thymoma I got diagnosed with Goods syndrome. I have been having Blood plasma infusions (Privagen) I have had no complaints from it.x
Yano would you please tell me how are you feeling about this trials. For example any improvement to your condition? What is the criteri tô part take on these trials?
Like you I am new to this forum. I have just been diagnosed with stage IV thymoma which has a primary site and secondary sites in both pleura. I have yet to start my chemo treatment but will start it in about 3 weeks. I had never heard of this illness before now + been told it is extremely rare.
Thanks for sharing a bit of your story on here has made me feel like I'm not so alone with it
Hi Cassie my Mum has got thymoma and over the last couple of years she has had 2 lots of chemotherapy and also surgery but it has still come back she has been offered a trial drug which I think is immunotherapy treatment but we are waiting to find out more and hopefully get it started in the next month ... it’s a very anxious time for my Mum the waiting game is horriable xx
What type of Thymoma does your mum have? Which hospital is she under? Would you please tell me more about her history.
I hope all goes well with your mum.
Sorry to hear you have this annoying rare cancer! I am now a year and three months down the track from my chemo and feeling well. My hair is back and I can do everything I once did. The chemo is not a pleasant experience but it is worth it. I found keeping up my exercise (walking) really helped. Even on the chemo days I walked (very slowly) round the block. Now doing 10 kms a day on average.
Anyway - good luck with the chemo and let me know if I can help with any advice while you go through this. (I am in Australia by the way although originally from Scotland)
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: