I was diagnosed with inoperable invasive thymoma (Stage III C) in October 2007, and underwent 6 rounds of chemo which shrank the tumour by about a quarter. Unfortunately my latest scan in June showed that it is growing again. My consultant has arranged for me to have an octreotide scan, to see if we could use this therapy to control the thymoma from here. I will be getting the results next week.
I know absolutely nothing about this treatment and wondered whether anyone has any experience they might share with me. Any information about side effects, impact on day to day life, etc. would be very welcome.
I'd also be keen to hear from anyone else who has unresectable thymoma - I know it's rare, but it would be good to share experiences.
As I'm new to What Now, I'm not sure whether I should be posting this as a blog or contributing to one of the forums, but I hope someone will put me right if I haven't got the hang of this yet.
FormerMember
Hi - I had an Octreotide 'test' scan to see if my tumours would 'take up' the radioactive material. They did take up some, but not enough to use as a treatment for me. I have a type of neuroendocrine cancer. From what I know, Octreotide is pretty effective if it works for you, and although you have to be in isolation whilst having it, I don't think they are any really bad side-effects. It is a radioactive isotope, which binds itself to the tumour and kills it off. Don't know much of the technical side, but if you google it, it'll give you all the info. Good luck, Jeanie x
Thanks very much Jeanie, I have since found out some information from the web about side effects - which mostly seem to be digestive-system related. While I am not a great fan of constipation, I suppose it's a whole let better than nausea, sickness and hair loss. Given that I don't have the test results yet, I'm just working on a list of questions for my consultant and hoping that some relatively painless options are available. How is your treatment going? I hope that the prospects are looking good. Thanks again for getting back to me. Irene X
Hello there. I don't come here often, but I am still here! Afraid octreotide didn't work for me, but that's no indicator that it won't work for your husband. My fingers are crossed for you both. I'm still here 7 years and 3 lots of chemo after diagnosis. Have spent a glorious 18 months living in Australia, and am currently away on a sailing trip - so don't think thymoma needs to stop all the fun in life. Happy to share my experiences - even if it's a rare and unpredictable disease. Best wishes. Irene x
Thank you for your reply, we are just feeling a bit knocked down at the moment as he had surgery which removed the tumour 12 weeks ago and some of it has returned already in his lung lining which we were not expecting and nor where the doctors. We will try and remain positive! Good to hear your enjoying life and not letting it beat you down emotionally! I shall try to do the same :-)
