Papillary thyroid cancer with lung mets

Tomo, are you in the UK or another country?
The proposed protocol is not what I would have expected from a UK hospital.

7 weeks thyroxine withdrawal is very unusual - are you not getting any T3 to substitute for some of that time?

I can't understand why the doctor wouldn't give you Thyrogen injections instead of forcing such a long withdrawal. Has that been discussed?

Telling you that a big dose of iodine might kill you does not sound like the words of a professional. There are alternatives to RAI and if the doc already thinks it doesn't work, why is he planning to give you so much. That's illogical.

Has anybody on your team ever mentioned Tyrosine kinase inhibitors (TKIs) - sorafenib, letvanib are two names they might use?

Are you still being treated at a regional hospital? Based on what you've told us, if you are in the UK, I would recommend asking to be referred to one of the big cancer hospitals like Christies in Manchester or the Marsden in London, or the big hospital up in Newcastle. If your case is a tricky one, you want the best doctors.

ThaBarbara real, thanks for your reply, let me say I have been told about the injections and been told they aren't as good as with complete thyroxine  withdrawal, and they are very useful as quick treatment for preparation for radioiodine. I know about the other drugs you mentioned but they are no good for my cancer which 8 have been told is rare and only option is radioiodine 3 more low doses and no more or go for the big bang which has got risks, I have decided to go for big dose radioiodine in the hope it may help me. I have been told that the cancer in my lungs is incurable, I have had full thyroidectomy on right side 7cm poorly differentiated thyroid carcinoma with some portions of papillary cancer, invasion of the trachea, oesophagus and larynx, subsequently multiple up 14mm lung nodules were found on a non contrast CT, presumed metastatic to give an overly staging PT4N1AM1, the surgeon done an excellent job but not %100 removal, also had to remove one of my vocal cords, I hope I have given all the info which may be useful, Tomo xx

I forgot to say yes I'm in local hospital 

Wishing you all the best @Tomo and hope the treatment works well for you x

Hi Petal, how are you doing I hope all is good regards Tomo x

Unfortunately it isn't, @Tomo I had to have an MRI on my brain recently due to headaches and migraines (had another one today), plus a CT scan.  I got the results of the MRI and was called in to Nottingham (where I had my op - I am under Lincoln otherwise) and was warned by Lincoln that they had discovered brain mets and I would be getting a phone call.  So a quick appointment.  I have 3  tumours the largest being 11 mm and they want to treat it with Stereotactic Radiotherapy.  Then I received all my notes through the post on Saturday (I had requested them) and got the results of the CT scan before my appointment on Monday this week.  So I knew what to expect.  My largest lung tumour has doubled again in size from the second RAI and I am RAI resistant, so it didn't do any good.  I have another small tumour on my oesophagus and another larger one in my spleen.  So the plan is to get the radiotherapy out of the way then my Oncologist wants to put me onto TKIs (Lenvatinib) asap.  So not great although my Oncologist said that she was hopeful that the treatment will help.

I am so sorry to hear that Petal, it sounds you got alot going on, I do hope they can slow it down at least, have you thought about royal Marsden they are the leaders in cancers maybe you could ask for a refferal or second opinion or maybe get on a trial. I'm sending you huge hugs and my best wishes, if you want to chat I'm here OK, love Tomo x

Gosh it would mean a lot of travelling to The Marsden @Tomo we live in the East Midlands.  Bad enough having to do a 130 mile round trip to Nottingham where they deal with my op and now the radiotherapy.  I feel well looked after and like you (re-reading your message) I found out I had poorly differentiated thyroid cancer in my lung (2 samples were taken in a lung biopsy) but when I asked my Oncologist she said I didn't have this, but I have it in writing and offered to show her it.  I don't know what is going on at times, I think probably too many hospitals dealing with me I have been to 4 different ones so far.

Wow that's alot of travelling @Petal, I thought royal Marsden was a charity hospital and might help with travelling and accommodation I may be wrong, surely someone would know, I have stage 4 lung mets so my options are running out treatment wise me thinks I'm radioiodine resistant but will have one last chance with it by having a large dose, but got to try it. Don't be afraid to ask your consultant questions as you have the right to know I'm lucky I have my consultant personal phone number and can ring anytime, my wife cries alot and I tell her to stop it as I don't want that getting me down, I have not cried at all over this cancer I just wanna enjoy holidays and good times with my kids and gran kids, I try to find nice things to distract me as I would get depressed.please let me know how things are going and I'll tell you if I have news. Tomo x

I am resistant too as nothing showed on my whole body scan after a higher dosage RAI in July, and they were hoping it would reach my lungs.  The first RAI worked on thyroid cells in the thyroid bed but it seems resistant in the lungs.  Sorry to hear your wife cries a lot but that is understandable, I have my moment, but in some ways it can be worse for the other person than it is for us, as we just have to get on with it and deal with it the best way we can.  Has anyone mentioned TKIs to you at all @Tomo?  I am to start taking them (Lenvatinib) as long as I am physically fit, a couple of weeks after the Stereotactic Radiotherapy.  That's the next stage of treatment to try and stop the spread and reduce the cancerous cells.  You are right of course you must enjoy your life and try not to dwell too much on things I agree, I keep myself busy and find that helps a lot.