All the best for Wednesday

Hi ruthjp

That qualifies as a rubbish week. I’m so sorry to hear about both the cancelled holiday plans and the lung mets. I hope you can rebook soon. 

How are you doing now, anndanv? I hope sun is shining where you are. 

I am on my way home from a weekend on the Isle of Wight. I slept on a bench in the sunshine on the ferry. It was bliss. 

Xx

Hi Guys ( especially TVman, Gragon,Grannytrisha,Ruth &Daloni)

Thank you so much for your replies, I will post tomorrow or Wednesday as I need to try to get some sleep now. I'm just so happy to be home and have seen our, son, daughter and their spouses as well as our 3 grandchildren, which is amazing!

I do have lots of bruises but will explain when I post!

Night night everyone, I hope you are all asleep and will see this when you awake or maybe after breakfast!

Glad that you are doing well. Keep comfy

Xx

Hi Annette and Gragon  and Daloni,

hope you are progressing well Annette since your surgery haven’t heard from you for a while.

i had my consultation with my oncologist and read the CT report and now have a copy of it so I can look things up.

disappointing news not only have my lung mets grown a lot but I now have a liver lesion and cervical nodes and subcarinal node.

he is keen for me to take a targeted drug called lenvatinib but I am not ready for that yet and have committed myself to more RFA for the lung mets in my R lung on the 25th April.

feeling unsure about things now . I really would love to have a vaccine bit that is not on offer just drugs with horrible side effects 

Hi Ruth 

oh that is disappointing. I’m so sorry. When was the consultation? I always feel unsettled and unsure for several days after meetings like that. I hope you’ll feel more settled soon. 

What did your oncologist think about your decision? I can totally understand your wanting to hold off another round of treatment and side effects but on the other hand I wouldn’t want to miss the window in which a treatment might work. It’s such a dilemma. 

I hope the RFA does the trick for now. 

Lots of love xxx

Thanks for the reply.

the consultation was on Monday. You  are right I do feel more settled now and felt weird for a few days. Not wanting to talk about it .

My oncologist  is lovely he is supportive and understands I am not ready to take to take the drug yet as I still feel well with few symptoms.

it is something for me to give me some hope in the future.

love Ruth xxx

Hi Ruth,

I'm sorry to hear about the new growth.  It is always upsetting when you hear that, but I'm pleased to hear that you are more settled now.  I can understand you wanting to avoid taking medication that carries a risk of side effects.  I hadn't heard of lenvatinib before so I googled it and see it is a tyrosine kinase inhibitor similar to the pazopanib that I take.  I have been lucky in that I have not had too many side effects and over time they have reduced but I know of others who have had to come off it within weeks due to the severity of the side effects.  It appears to be a bit random as to who will cope well with it and who will have an adverse reaction.  I hope that the RFA holds things at bay for a bit longer.

I hope that you can enjoy the good weather that is forecast for the next few days and don't get too stressed out before the RFA next week.  I will be thinking of you as I am due to see my oncologist on the same day.  Just a routine appointment in between scans when he will just ask me if I have any concerns or problems and give me my next six weeks worth of medication.

All the best,

Gragon xx

Thank you for the reply. It always helps when someone is in a similar situation.

i am trying to pluck up the courage to try this drug frightened of the side effects but it may be that I am someone who can take it without too many problems.

I will wait another 6 months and meanwhile will have the RFA . I was going to have anther session a few months after the one on 25th April.

i thought I would have the 2 cm lesion in the left lung ablated but Alice suggests she does more in the right lung. I was also going to ask whether it would help having the one in the liver ablated.

i have heard that when they reach over 2 cm the cancer may then start to go elsewhere in your body other than your lungs.

if mine keeps spreading elsewhere I think I will give this lenvatinib a go.

How long have you been taking the pazopanib ?

Levatinib is my possible future medication. That or Sorafenib.

Those two TKIs are used for advanced, non avid, thyroid cancer. Right now mine is advanced, but it's still avid. However every round of radiation I have is spinning the roulette wheel to it mutating and becoming non avid.

So I know a few people on it and it's been successful for them, and they've actually not had any side effects that were too bad and that they couldn't cope with.

Good luck with whatever route you take!

Lass

XX

Thank you for the message .

it is good to know that there are people coping well with the drug.

my oncologist is familiar with it for patients he has with thyroid cancer and says he can reduce the dose if necessary.

Good luck luck with your treatment 

Ruth xxx