Your only on 150mg? That's not that high I've been on 225-250mg for a few years and it really helps with energy and weight. All though it has put my blood pressure up slightly. You definitely need a second opinion they sound awful. Hopefully the London hospital will have some ideas and hopefully your genetic markers will reveal something!
I’m 58 years old. Started with Tg of 83.9 has fluctuated between 69 and 176ng/L.Lastest measurement was 113ng/L Never been below 69ng/L. We were aiming for less than 40….but that has not happened. Tg antibody: fluctuating between 11iu/L and 15Iu/L - had RAI uptake in rib and lung but lung nodules shown up on CT with contrast.
Yes, but we are achieving the TSH suppression we were after - they want it below 0.1 and mine is between 0.01 and 0.03…. I think they want to keep it as low as possible because of my history of heart palpitations….??
I’ve been told I have a tiny chance of a specific genetic marker called TNKR for which the only targeted therapy available is only available privately at a cost of $25,000 per 4week cycle!!!
I am so encouraged that you have been told of various targeted therapies available for RET mutations. Hopefully they will find a similar gene marker that has several treatment options.
I have RIA papillary thyroid cancer. I found out last week it has spread to my spine, its already in my lungs. I have to see my oncologist in 6 months and apply for other treatment. Whats keeping me awake is that I was told if I have pins and needles in my legs I should go to or call 999 straight away. Im now terrified nothing can be done for me.
im so sorry to hear of your diagnosis. I have two types of thyroid cancer but suffice to say it came from papillary thyroid cancer (follicular variant) and is also metastatic (lungs, skull/brain and rib). It’s a scary place to be and can be very isolating so welcome to our thread and I hope we can offer some comfort.
I was diagnosed 18 months ago and am still going strong. Obviously, each of us is different and our experiences will be very different but my cancer is refractory to RAI (not working) so I am concentrating on living as healthily as I can to stay strong whilst I await a second opinion as I’m not happy with my oncologist.. I am waiting for my genetic analysis results - the genetic mutations can inform the drug of choice for us. In the meantime, I Am trying to exercise 5 x 1/2 hour workouts/brisk walking a week whilst I await a second opinion at the Royal Marsden. Nordic walking is great!
Try not to worry. New drugs are coming out all the time and molecular therapy is showing a lot of promise. Have you thought of getting involved in research? There are three centres in the UK that carry out research into thyroid cancer - Oxford, Royal Marsden, and Cambridge. You can ask your consultant to refer you and don’t be afraid to ask for a second opinion.
Has your tumour been sent off for genetic analysis? Do you know which mutation you have?
I have done a lot of reading in the Lancet, BMJ, PubMed and it seems the best thing we can each of us do to stave this all off is to keep as fit and otherwise healthy as we can. Recommended exercise advice is 5x 1/2 hour moderate exercise a week. My team also recommend vitamin D or plenty of sunshine (ahem…) and vit C supplements and a very healthy diet. Ask your team or your local cancer support group for guidance on this.
