Papillary thyroid cancer with lung mets

HiHi Petal, my consultant rang me today and looks like I'll be going for this large dose of radio iodine around Jan 2024  I said to him was it worth a try seeing I was resistant and he said that I misunderstood and that I'm getting uptake from last 2 treatment so apologise for that. How's your headaches? I hope they can help you with them. When will they start your treatment? I hope they can help to slow down things for you. Can they remove lung tumours or partly remove lung? My surgeon left thyroid tissue in my neck cause of cancer in my throat I asked why he left it, he said I would have to had a hole in windpipe and a tracheostomy, so I was pleased he left it. Let me know how your headaches are and best wishes to you Petal regards Tomo x

Well that is good news that you are not resistant Tomo that must give you hope that a high dosage will do its stuff, fingers crossed for you.  My headaches are manageable and not not too bad at the moment, more the visual disturbances I get daily, but I have always suffered from migraines and visual disturbances but not on a daily basis like this.  The TKI tablets are supposed to tackle the lung and elsewhere once I have the radiotherapy, so we shall see and remain hopeful that it will.  I am waiting for the a phone call and was told it would be within the next 2 weeks for the radiotherapy.  I was told when I had my op that I was high risk for a tracheostomy too due to paralysed vocal cord at the time, but luckily I didn't need one, but it was quite scary.

Wishing you all the best  Tomo  and Petal66   - sincerely hope your treatments are successful x

Thank you @Runibee x

Thanks Runibee

Hi all, had phone call from my consultant and really I feel confused, he said he was having trouble getting the high dose of radioiodine and his last chance was from Poland, he asked on a group chat to other consultants and hospitals as to whether they could do my radioiodine blood count which was needed to. Make sure the high dose of radioiodine to be safe for me to have and to see if there was an hospital that could treat me and the answers were no from hospitals and consultants, I just left feeling let down and confused, he said he'll talk in a fortnite and let me know if there's any changes. The treatment is rare but I'm willing to try anything to prolong my life. Love Tomo xx

That isn't very reassuring @Tomo I know they have had problems getting the pills in the past it happened to me my first time having RAI and I had to wait a couple of weeks, hope that is the case for you and they can access the pill, but I am wondering why other hospitals have said they can't treat you.  A fortnight is a long time to wait when you are left wondering what is going to happen.

Hi Petal, consultant said its a high dose of radioiodine only been given to two others, I think its high and complex because they got to calibrate machines which takes a while, the phycists said they are happy to do it but something to do with testing my blood count but just don't understand why other hospitals in London can help. I feel totally deflated and feel embarrassed to ring consultant and explain again as I have rung him already lol. Petal how are you doing? Tomo x

Well you should contact your Consultant and don't be embarrassed, you need to know what is happening @Tomo.  I do know one of the problems with RAI can be Xerostomio which is bone marrow suppression as I was warned of this when I had my second dosage, so it could that they are being cautious with you about giving you a large dose that could cause you further problems.  I am ok, a bit anxious waiting for my date for the Stereotactic Radiosurgery and rang them last week to see what was happening.  They said they are still planning and it is complex so taking more time but they are hoping to do it this week, so feeling a bit nervous if I am honest.  My Oncologist's secretary also rang to say my Oncologist would ring me tomorrow, I think possibly to check where I am with the radiotherapy as she is wanting to start me on Lenvatinib but said to wait for 2 weeks after radiotherapy to see how I am first.  2 different hospitals so she may not know that I haven't had it yet as they did say within 1-2 weeks and we are over 2 weeks now.

Hi Tomo how are you doing